Thanks for the reply Dr. D. I have, in fact, read that high ICP goes along with leaks. Sometimes the high pressure is though to be contributory to the leak, others it is thought to result after the leak as a compensatory reaction to the fluid leaking and the pressure going low. The thing that really makes me wonder is that my son has the (what we think of as) classic progression of large head until age 2 and then sudden drop off of his growth. His failure to grow was so severe he was eventually treated with growth hormone, was not producing any of his own (pituitary anyone?). We were fortunate to find a doctor to treat his growth at all, and we recently consulted with a premier pediatric endocrinologist who was surprised that an MRI was never done. Since he has normal growth hormone now for his age, the MRI is not indicated now. He has no headaches, but is irritable and has severe difficulty concentrating. Are there other symptoms we could look for that might validate that he really should have an MRI?
@susan_sk it is really good to hear that description of the headache from Dr. Schievink, mine started with progressively worsening numbness then went to getting a pressure related headache by late each afternoon. The really frustrating thing is that I did mention the postural component when the pattern first started, but was dismissed as “everyone feels better lying down”. Then the pattern went chronic and I was in so much pain all the time that there was no longer a postural component. It wasn’t until mast cell meds that I got a little control of the symptoms and noticed that I was worsening from being upright. Since I previously had more classic migraine with aura, all my symptoms were immediately diagnosed as just a different type of migraine. Sitting on the couch seems to be the worst, something about slouching and tipping the head forward.
So nice that Dr. D has the academic chops to take this issue on with her medical background and her willingness to be the guinea pig. For my part, I’m willing to share all of my remaining brain power and the knowledge I’ve gained about mast cell disorders. I’m also willing to share my medical records and imaging, and would volunteer for any research purposes. So if you need any of my records or need to examine me, Dr. D., I’m in!